On Monday, I posted about our troubles with reading. And if you read here, you know me. I try to always find a silver lining. But sometimes you can’t. Well, maybe you could but it’d be a bit of bull…
Reading troubles multiplied by a millionfold on Tuesday night.
Tuesday night was the last straw. He’d had seven hours of school, followed by 3/4 of an hour of PT, and an hour of OT. Then there was the half hour drive home to discover he had to read 10 pages for homework. He ate dinner and had a few minutes of a break. Then, we sat down to get through it.
He stopped reading every two or three words. He looked away. He sat there. He simply would not say.the.word in front of him. I pushed him. I wondered what was going on. He held his head on the sides of his eyes. He cried. He rubbed his eyes and said they hurt.
I wondered if he couldn’t see clearly. My husband is far-sighted (he can’t see things up close). I am near-sighted (can’t see far away). We tried both my glasses and my husband’s glasses on him. He seemed to find mine slightly helpful, but pulled them right off.
Now, I’m in mild worry mode. You know the mode? You start imagining there’s something worse than a case of a tired child who doesn’t want to do homework. But at this point, I’m thinking, maybe glasses. That wouldn’t be so bad. I wear those…
But he continued to complain that his eyes hurt. Then, he slapped his eyes Tuesday night, with his hands. Not hard, but with deep pressure. He asked me to read, instead. And he cried.
I held him. We put the book away. I got him ready for bed and gave him Children’s Tylenol. He was fussy. Then, he had a bloody nose. I cleaned him up, gave him his breathing treatment on a nebulizer, and he finally fell asleep.
As the mom of a child on the spectrum, there are all the usual worries as a mom. Then, there are worries about getting:
to this or that therapy,
to the restroom,
through general anesthesia for an MRI of the brain,
through general anesthesia for dental surgery at age 6,
through parking lots where he may dart when he’s frightened by noises,
to therapy to desensitize him to sounds that cause himself to do dangerous things like running in parking lots… the list goes on.
So truthfully? I’ve been brushing this “eye” thing aside for quite some time. It’s times like these that I curse myself. Who gave me “authority” to brush anything aside? Of course, as I’m doing it, I’m not thinking how much more I know than my son. I’m worried that I’m over-worried . Does that make sense?
So, when he tells me that his head hurts, or that his eyes hurt, and he rubs them, or says he can’t read his homework, I give him a break, like he’s just a perfectly regular healthy kid. Then, I give him some Children’s Tylenol and we go back at it, because, I assume he’s just tired. He does ten times the work that an average child does just to keep up with that average child. I gloss over the hurt.
And, though fleetingly it crosses my mind that he might have something more serious than a case of the “tireds”, I don’t want to go there. But when my kid slaps himself in the eyes and cries, I finally take notice.
The next day, I made the usual calls – to every medical provider. An appointment was set with the pediatrician, a woman who has know him since he was 7 days old.
He was so good. It was the best visit we ever had with her. He answered her questions. He paid attention. He let her examine his eyes and his ears (unheard of – I tell you!). She let him examine the instruments before she used them.
And then, we talked. We talked about eye exams and optometry. We talked of getting glasses. And we talked about the symptoms of a craniopharyngioma. And I freaked out.
A craniopharyngioma is a noncancerous tumor that is centered around the pituitary gland. It is a slow growing, rare tumor that occurs in children mostly. She told me she didn’t think my son had one, but she told me about four years ago that he probably did not have autism when she made that referral…
She told me about a little boy who was about my son’s age when he began to say that he couldn’t read his homework. I said I’d thought he was able to see just fine when he was typing search terms for a YouTube search, or playing on his iPad but not so well when it came time for homework reading, which made me wonder whether he was just “playing me”. She said this other little boy (age 7, like my son is about to be) also had problems reading his homework, and his parents felt the same way – and both those parents were physicians.
The way she explained it, the tumor presses on the optic area (remember – this is me repeating as mom – not a doctor!) which causes a kind of binocular, tunnel vision effect where if the child concentrates hard, he can still see enough to make out a few words and read. And this is what my son’s been doing. He’s reading two or three words and looking away.
So we are off to see, yet another specialist, to see about yet another diagnosis. And I’m watering my keyboard because I’m afraid, and it’s just too much. He’s only just about to turn 7 years old. It’s not fair. It’s not right. But that’s just life, isn’t it?
I did watch him closely last night as he struggled again with his reader. I stopped him every paragraph and asked if he could see the words. He answered “yes.” I asked him if he couldn’t see the words. He said “could see the words“. I hope and pray it is just eye strain and an issue of glasses. . .
Will you pray for my little boy with me?